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#teammikaere

On Kai’s wonky eye

By 25th April 2019 No Comments

Mikaere has a wonky eye. It’s not called a wonky eye, it’s called intermittent left hypertropia with exotropia. Big words, but essentially means that Mikaere isn’t always able to align his eyes in the same direction. It would be but like going cross-eyed, but only one eye (his left), not both.

Hypertropia means it floats up (instead of staying in the middle) and exotropia means it floats out (the opposite of going cross eyed).

There isn’t much that can be done to fix it. Surgery (which we won’t consider). There is a study happening on patching, but there isn’t enough evidence that it would help for me to want to put Mikaere through that (Quality of Life is always front and centre of any treatment plan).

Apparently it shouldn’t effect his vision too much, and is a side effect of NKH. What’s more it’s not all the time, mostly when he’s tired or stressed. If it is bothering him, he’ll stop for a moment, still himself and close his eyes. When he opens them sometimes his eyes reset themselves and orientate in the same direction.

The trickiest thing for me is the stares when we’re out and about. Being in the supermarket and a kid asks ‘what’s wrong with that babies eyes?’ before being pulled away by their parents. (Sidenote: please don’t do that. Encourage your kids to ask questions. Please just politely ask instead of making something up or shushing your kid).

As a side note, it turns out Mikaere is ever so slightly (3 dioptres) far sighted! I get the impression this is a common NKH symptom, and easily fixed with glasses. However, I don’t necessarily feel would improve Kai’s quality of life enough to warrant fighting with him to keep glasses on his face, and our opthomologist didn’t feel strongly, so we passed. It has helped us though, when we hold things for him to see, we start from far away and move it forward until he focuses on the object. Even just having the knowledge that he’s ever so slightly farsighted has changed the way we interact with him.

The other thing is that he’s got less farsighted as he gets older, and we’ve also noticed that his eyes are less wonky. (By that I mean, the frequency of his wonky eye periods are less the more well he is, and they increase when he’s poorly or tired).

Hey ho. I think it’s just ‘another thing’ we manage hey. Rare metabolic disorders and wonky eyes. Onwards we go!

 

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